Quality of life of Malaysian children with CHD

Ong, Lai Choo; Teh, Ching S; Darshinee, Joyce; Omar, Azimah; Ang, Hak Lee

doi:10.1017/s1047951117000166

Cited by 9 publications

(15 citation statements)

References 28 publications

(119 reference statements)

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“…Table 2 shows the proxy-report PedsQL V.4.0 scores of our Malaysian children with TSC compared with published cohorts of healthy children, congenital heart disease, obesity and beta-thalassemia in Malaysia 11–13. As a composite group, children with TSC had significantly lower total and psychosocial health summary compared with healthy children and those with other non-neurological chronic diseases.…”

Section: Resultsmentioning

confidence: 99%

“…Results are presented as mean with SD for normally distributed data, and median with IQR for non-normally distributed data. Student’s t-test was used on the assumption that our study PedsQL scores are normally distributed to enable comparison between mean proxy-report PedsQL scores of participants of the current study with published values obtained from a Malaysian cohort of healthy children,11 congenital heart disease,11 obesity12 and beta-thalassemia 13. For the TSC group and healthy children, comparisons were also made across four age groups: 2–4, 5–7, 8–12 and 13–18 years.…”

Section: Methodsmentioning

confidence: 99%

“…The sample size calculation was based on an expected 10 point difference in mean total PedQL score between the TSC group and the published score of the control cohort (82.7, SD 15.4) 11. Based on an alpha of 0.05 and a power of 80% using the SPSS sample size programme, the minimal sample size required was 38 per arm.…”

Section: Methodsmentioning

confidence: 99%

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Quality of life of children with tuberous sclerosis complex

Fong

Kong

et al. 2019

Arch Dis Child

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AimEvaluation of impaired quality of life (QOL) of Malaysian children with tuberous sclerosis complex (TSC) and its possible risk factors.MethodCross-sectional study on 68 parents of Malaysian children aged 2–18 years with TSC. QOL was assessed using proxy-report Paediatric Quality of Life Inventory (PedsQL) V.4.0, and scores compared with those from a previous cohort of healthy children. Parents also completed questionnaires on child behaviour (child behaviour checklist (CBCL)) and parenting stress (parenting stress index-short form). Multiple regression analysis was used to determine sociodemographic, medical, parenting stress and behavioural factors that impacted on QOL.ResultsThe mean proxy-report PedsQL V.4.0 total scale score, physical health summary score and psychosocial health summary score of the patients were 60.6 (SD 20.11), 65.9 (SD 28.05) and 57.8 (SD 19.48), respectively. Compared with healthy children, TSC patients had significantly lower mean PedsQL V.4.0 total scale, physical health and psychosocial health summary scores (mean difference (95% CI): 24 (18–29), 20 (12–27) and 26 (21–31) respectively). Lower total scale scores were associated with clinically significant CBCL internalising behaviour scores, age 8–18 years and Chinese ethnicity. Lower psychosocial health summary scale scores were associated with clinically significant CBCL internalising behaviour scores, Chinese ethnicity or >1 antiepileptic drug (AED).ConclusionParents of children with TSC reported lower PedsQL V.4.0 QOL scores in all domains, with psychosocial health most affected. Older children, those with internalising behaviour problems, of Chinese ethnicity or on >1 AED was at higher risk of lower QOL. Clinicians need to be vigilant of QOL needs among children with TSC particularly with these additional risk factors.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Quality of life of children with tuberous sclerosis complex

Fong

Kong

et al. 2019

Arch Dis Child

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“…This said, our mean emotional functioning scores were similar to those of patients with corrected defects in Pakistan, 18 higher than those of palliated single ventricle patients in two high-income countries, 15,16 and lower than those of healthy control groups in both low-middle 4 and high-income countries. 12,14,16,17 Established predictors of poorer emotional quality-of-life in patients with corrected or palliated defects or those with mild lesions that did not require corrective surgery include: low family income, 12,17,[19][20][21][22] short duration of parental education, 23 single parent status, 24 ethnic minority status, 25 absence of spirituality, 25 at least one regular symptom, 19,26 subjective exercise limitation, 27 NYHA class, 23 ROSS Class, 28 objective exercise capacity, 19,29 specific lesion types, 13,18,[30][31][32] lesion complexity, 12,13,16,[33][34][35][36][37] previous surgeries, 38 number of clinic appointments, 27,33 school absence, 23,39 and medication burden. 18,27,33,39...…”

Section: Comparison To Previous Studiesmentioning

confidence: 99%

“…The lack of sibling or age/sex-matched control arm and the absence of any available data in the literature on population norms in our settings was also a limitation. Because we conducted the interview simultaneously with other components of the pre-operative workup, in some cases both patient and parent/proxy were present and parent/proxy input may have influenced patient scores 12,16,20,28 particularly in the adolescent age group. 12 In some settings, use of more than one local language/dialect presented translation difficulties which could have influenced interpretation of questions.…”

Section: Study Limitationsmentioning

confidence: 99%

Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries

et al. 2020

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AbstractBackground:Little is known about emotional quality-of-life in paediatric heart disease in low- and middle-income countries where the prevalence of uncorrected lesions is high. Research on emotional quality-of-life and its predictors in these settings is key to planning interventions.Methods:Ten-year retrospective cross-sectional study of children aged 6–17 years with uncorrected congenital or acquired heart disease in 12 low- and middle-income countries was conducted. Emotional functioning score of the PedsQL TM 4.0 generic core scale and data on patient-reported limitation in sports participation were collected via in-person interview and analysed using regression analyses.Results:Ninety-four children reported mean emotional functioning scores of 71.94 (SD 25.32) [95% CI 66.75–77.13] with lower scores independently associated with having a parent with a chronic illness or who had died (p = 0.005), having less than three siblings (p = 0.007), and reporting a subjective limitation in carrying an item equivalent to a 4 lb load (p = 0.021). Patient-reported limitation in sports participation at least “sometimes” was present in 69% and was independently associated with experiencing symptoms at least once a month (p < 0.001).Conclusion:Some of the factors which were associated with better emotional quality-of-life were similar to those identified in previous studies in patients with corrected defects. Patient-reported limitation in sports participation is common. In addition to corrective surgery and exercise, numerous other interventions which are practicable during surgical missions might improve emotional quality-of-life.

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A systematic review and meta‐analysis of school and cognitive function domains of health‐related quality of life measures for children and young adults with congenital heart disease

Mamasoula,

Pennington,

Adesanya

et al. 2023

Birth Defects Research

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BackgroundResearch on cognitive and school functioning domains of health‐related quality of life (HRQOL) for children and adolescents with congenital heart disease (CHD) presents inconsistencies.ObjectivesTo summarize and synthesize data on school and cognitive function domains of HRQOL for children and young people (CYP) with CHD.MethodsFive electronic databases MEDLINE, Scopus, PsycINFO, EMBASE, ERI, and citations were systematically searched. We included original‐research articles reporting the cognitive and school function domains of HRQOL for children and young people with CHD (child and parent reports included). Both fixed and random‐effects meta‐analyses were performed to estimate pooled mean test scores for cognitive and school function. A total of 34 studies met our inclusion criteria and were synthesized narratively, 17 studies were included in formal meta‐analyses.ResultsSelf‐reported cognitive function was lower for children and young people with CHD than healthy controls (SMD −0.28 (−0.42, −0.15)). Parental reports demonstrated similar results to self‐reports (SMD −0.54 (−0.91, −0.18)). School function was lower in children and young people with CHD compared with healthy controls in self‐reported (SMD −0.30 (−0.48, −0.13)) and parent reported HRQOL (SMD −0.49 (0.64, −0.36)). Self‐reported school function domain scores were lower for young (<8 years) (SMD −0.65 (−1.32, 0.03)) and older children (8–18 years) (SMD −0.25 (−0.47, −0.03)) with CHD than their peers. Similarly, parents reported lower school function domain scores for young (<8 years) (SMD −0.68 (−1.29, −0.07)) and older (8–18 years) (SMD −0.46 (−068, −0.25)) children with CHD than typically developing peers.ConclusionChildren born with CHD may experience lower cognitive and school function HRQOL scores than healthy controls (self and proxy‐report). This is consistent with a subgroup meta‐analysis of young (<8 years) and older (8 years old or more) children with CHD reporting lower school function scores compared to controls.

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Quality of life of Malaysian children with CHD

Cited by 9 publications

References 28 publications

Quality of life of children with tuberous sclerosis complex

Quality of life of children with tuberous sclerosis complex

Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries

A systematic review and meta‐analysis of school and cognitive function domains of health‐related quality of life measures for children and young adults with congenital heart disease

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